Home of the Four Trans

Our season of change:

I’ve tried many times before, but the words wouldn’t come out right so I never pushed published. It’s been almost a month and I felt it was about time that I gave an update on our family’s status. There’s been lots going on, mostly in my mind, but in the real world, too.

I’ve started giving my time to my church volunteering as a teacher’s assistant for catechism class (I finally learned to make time). I love working with the kids and getting a refresher on the scripture while I’m at it.

Nathan and Justin got their first colds of the season with mucous filled throats and noses.

We’ve decided to homeschool Nathan this year as a test run for the next several years (I’ve been spending many a nights researching on different methods of teaching, support groups, and learning materials).

We’re planning for Justin’s transition into the school district as a special ed student next year; the actual process begins in January. The emotions are overflowing; I never considered having to accept the label of special ed for my son; to me, he’s bright and amazing…not special ed.

Our lease is up in January, and we’re still deciding which school district we should live in for the sake of getting the most beneficial special education program for Justin (some more research and school visits to be done within the next month so that we can make our decision) all the while contemplating the benefits of homeschooling him.

Also, with the president declaring the H1N1 pandemic a national emergency doesn’t help the worry any.

Since I don’t drink, I’ve been washing away my sorrows in shows like FlashForward, Grey’s Anatomy, Dancing with the Stars, and sometimes Ugly Betty and Cougar Town.

Please pray for us as we embark on these new journeys of our life. In particular, please pray for my children and their health (especially with the H1N1 going around).

Thank you for checking in on our family :).

Hi, Family and Friends!

Thanks for checking in. I’ve been neglecting the blog for several reasons, but mainly because I wanted to devote my time to my children and savor every bit of the summer with them while they’re in great health. So, excuse me for the lack of updates.

I’d given Justin a break from medical stuff (i.e.; doctor appointments and tests) for the month so that he could enjoy the things little boys are made of. I enrolled him in a Mommy and Me music class and gym. He especially loves the social aspect of the classes, but also enjoys the core lessons of each of his classes as well. In music class, he loves to sing, dance, learn new hand motions to new songs, create sounds with different instruments, and exercise his tonal understanding. In gym class, he enjoys me rolling him into somersaults, climbing up padded stairs, popping bubbles, whacking balls, and scooting around on his bum.

For those who are wondering, Justin still cannot walk, or crawl for that matter. He spends most of his time scooting on his bum, and has gotten quite efficient at it. However, he has learned to pull up to standing with his one unaffected arm, and cruise around chairs and tables.  He is noticeably eager and willing to walk independently, but that darn right leg is not cooperating. He still shows weakness in his right ankle and foot, thus the lack of stability and support to walk independently. He is able to take steps with my assistance, and tends to take advantage of my help by running as far as he can. Because he is not bearing weight into his right leg, he is not taking quailty steps, and appears to be flying most the time. His physical therapist is recommending a brace, although his orthopeadist (the one who writes the prescription for the brace) does not. I, his mother, see benefit in putting him in a brace even if he may be dependent on it for life because it will allow him independence and opportunity to grow cognitively.

Despite his inability to walk or use two hands/arms equally, he continues to grow cognitively and emotionally. He’s been verbalizing more in addition to using some of his sign language, pointing, grunting, facial expressions, and babbling to communicate. Lately, he’s been doing a pterodactyl type screech to either get attention or when he doesn’t get his way; we have implemented the “time out corner” technique to minimize this. He is quite mischevious these days, and getting quite good at manipulating to get his way. For example, when I put him in the corner this evening for whacking and eye-poking his Papa, he immediately climbed onto me to hug me and rested his head on my shoulder, then chuckled, like he knew he was going to get away with it. When I pulled him away to explain to him why he needed to be in the naughty corner, he immediately crossed his arms and bowed his head, and said “Ah” (a customary way for children to greet their elders in our culture). He knows that when Nathan gets the corner, before he is allowed to move from it, he is required to cross his arms and say sorry for whatever it was that he did wrong; essentially, he was trying to skip all the steps and get to the end.

Upset because he did not want to take a picture!

Sucking on the lollipop that pacified his tantrum. Bad Mom, I know.

Justin has gotten more attached to me, now.  He prefers Mama for everything from putting him to sleep to feeding him his bottle or holding his cup; He’ll cry and scream if Loi tries to help. He is quite independent with feeding himself with a fork or spoon, as well as bringing a cup to his mouth, but since he sees me feed Nathan, he screeches for me to feed him, also. He’s gotten quite competitive with his brother, not allowing his brother any time with Mama.

Justin is a troublemaker. He hits his brother, gets into pantry doors, swipes his brother’s toys, climbs over his Papa and talk during reading time, hang over the arm of the couch only after I tell him ‘no’, and was caught red handed playing with the toilet water (you heard that right. Toilet. Water). This is all new to us because Nathan did none of these things. The worst part is Justin has such a sweet face that he literally can get away with anything. He only needs to bat his long lashes, and flash his sweet smile, and I’d melt. But, so would not be fair to either of them.

Most importantly, Justin is an incredibly happy and friendly little boy. He wants to make friends and be friends with everyone. When we go out, it’s hard to get him to stop staring and smiling at people. He has a technique of getting people’s attention by staring at them, waving, and smiling, even if they’re not looking at him. Of course, eventually they do. During one of our restaurant outings, he reached his hand out from his high chair to touch the people walking by. There were a few times I could not stop him in time.

Justin is just a really sweet kid. When I sneeze (which is quite often when my allergies act up), he says “bleh u”. When it is time to say good-bye, to anyone, he waves and says, “bah, bah,” then does the sign for thank you while saying “thay u”, then blows a kiss. When he has food in his hands or on his table, he insists on sharing by pushing food into my face to eat, or taking crackers out by twos so that he can give one away. It’s hard for me to keep from kissing and hugging him all day long.

A few of his favorite things: Baby Einstein, books, dancing, cars, and music.

He weighs about 21-22 pounds at 24 months, and measures about 31.5 inches long.

Thanks, again, for checking in on us!

Two years ago, Justin made his grand entrance into the world with a giant wail. I’ll never forget the way he immediately became calm when he saw and heard his Mommy for the first time. He was screaming with his nauseated newborn voice while getting measured, weighed, blessed, etc. But, the moment he sensed his Mommy’s body and voice, his wailing stopped. He comfortably settled into my arms, quiet and content. By that time, everyone but my sister, mom, mother-in-law, and Loi were allowed in the room. Everyone else was outside, and was questioning why Justin had suddenly stopped crying. It was because of me.

A few minutes later, we were separated for six hours (the number of hours it took for the stupid epideral to wear off. The epideral that was administered when my baby was already down, and ready to go. The epideral I was pushed to get. Ugh.) before seeing each other again. I remember watching the clock wondering how my baby was doing. I remember my sister bringing me a picture she had taken of Justin as he was pushed down the corridor to  NICU at the Children’s Hospital next door, with his eyes wide open, curious of the world around him. I remember the sadness I felt, even days later, for not yet having seen my child’s eyes opened. The next time I saw my newborn baby, he was surrounded by a respiratory therapist and nurses because he was under respiratory distress as a side effect of the medication that was given to him. At that time, the first time I had to spend with my new baby, he was intubated and connected to tubes, wires, and machines; his eyes were still closed. I remember the tears I shed for the pain my child suffered. I remember singing to him, “You are my sunshine.” I pecked him on the forehead. I rubbed his tiny fingers between mine. All the while, he continued to sleep, comforted by his mother’s warmth, I’m sure.

A few hours after our time together, he was prepared for transfer to Children’s Hospital in LA where his surgery would take place. I remember how he cried in his sleep while the transfer team prepared him for the helicopter ride. He squeezed my finger with his whole golf ball of a hand.

I remained at home in Orange County resting, healing, and pumping while Loi bonded with Justin.

I came up four days later, the day before his first open heart surgery. I held my baby, with his eyes still closed…and, didn’t want to let go. But, I had to. As I looked through the images of the pain my child suffered following his arrival into the world (pictures that are difficult for me to see, and I’m sure will be even more so for you), a feeling of heaviness fell upon me, as it did back then; no child should have such a cruel and cold reception into the world; no child should be away from his mother’s cradling arms for so long.

I did not see his eyes until days after his heart surgery.

Now, two years later, he’s by my side, like a joey to a kangaroo, and I take not one moment for granted. His wails have been replaced by urgent calls of  “Mama! Mama! Mama!” And, those eyes, the ones I had achingly longed to see?  I knew there was something special about them. His neurologist once said, “The eyes are the window to the soul,” and somehow, Justin’s spoke to her. An aunt once commented on how his eyes look straight to your heart. When we go out, he draws people to him with his bright eyes while batting his lashes. Yes, they are special, almost as special as the person who sees with it.

So, how do we celebrate such a life that has touched us so deeply? How do I create a day to express to him how very special he is to us. Because of our (my) fear of what the future holds, I tend to cram the days of our lives with mini celebrations by way of outings and adventures. I pack the days with wrapping my arms around him and kissing him and telling him how special and cute and wonderful and amazing and lovable he is. I cook for him. I let him be, explore, smile, dance, laugh, watch tv, eat ice cream, scoot around with just a diaper and shirt on–because to live life is to celebrate it, right?

Well, on his birthday, I gave to him the only way I knew how–through the labor of my love. I spent 4 hours total on his double layer, 9″, marshmallow fondant chocolate cake (it was my first time ever baking something so fancy hence the hours of labor). I beat, mixed, kneaded, rolled, cut. I spent another hour printing, cutting, gluing, and stringing his personalized birthday sign together. I filled balloons with helium. Whether or not he understood the significance of his day, I wanted him to see the festivities that surround it. Loi helped make his birthday hat, wrapped his present, and most importantly kept the kids away on a special trip to McDonalds for breakfast (so they could play on the playground, also), and a couple of trips around the block so that I could create the “surprise” for Justin. Nathan helped decorate the birthday table with his cars, and was so proud of accomplishing his “mission”.

Although he did not say it, I know Justin understood everything was for him. He was so happy to see his “pat, pat” ( his words for “Little Einstein”) cake, and squealed in delight. While we sang “Happy Birthday” to him, he clapped. At the end of the song, he knew he needed to blow out his candle, and he was successful (after several attempts)!

Opening his one and only present was a hit.

We spent the day at Jumpin’ and Jammin’, an indoor playground facility. Justin spent most of his time in the toddler area, scooting around, watching other kids, and trying to interact with them. He also spent some time with Nathan collecting balls and loading up the shooters.

Loi and I just wanted to spend time with him as a family, with all of us together. As simple as that sounds, being together is a treasure we cherish deeply because our past experiences have proven that we may not always have this luxury.

We ended the day with a birthday bath, and of Justin trying to show us how old he is, now!

I hope my little one knows how much he means to us. Happy Birthday, My Love!

P.S.

Justin was torturing his brother for some of the day, hitting him with cars, and taking apart his LEGOS. I had to put him in a corner at one point. It was his day, but I had to do it. Learning the concept of discipline is a part of living life, yeah?

Thanks for checking in on our little man and allowing him into your lives.

Since we’ve had Justin, we’ve learned to enjoy the simpler things in life. Big vacations to faraway places do not play into our plans as Justin is limited to where he can go in altitude and proximity to hospitals and medical care. As residents of sunny Southern California, though, we’ve found there to be endless opportunities for exploring and excitement here in our home state.

Mall

It’s been awhile since we’ve been to South Coast Plaza. Aquariums, parks, and Legoland have taken the place of shopping, but, we had a birthday gift to shop for at the Disney Store this particular Friday, so off we went.

Warm croissants and pastries from Vie de France, carousel rides, balloons, and toy stores. Need I say more?

These balloons are $6 each! My kids didn’t ask for one, thank goodness. But, they sure are pretty to look at!

Justin was not so sure about the carousel.

After one round, he warmed up to it, and wanted to go for a second time! After the second time, he didn’t want to get off! After he got off, he kept pointing at the carousel, and grunting to insist that I take him on, again. Didn’t happen.

Nathan had fun, he really did. He just hates getting his picture taken. Don’t know why…

Justin and Nathan playing at the train table. Notice that Justin is standing and playing by himself! Yay!

Again, the brothers playing side by side. Notice how Justin is standing by himself and playing with his unaffected arm. Yay!

I don’t get why the kids are so intrigued by the escalator. I think they went up and down all 3 flights. But, it’s sure good for providing them with sensory input.

On this trip, I’ve noticed how much more independent my children have become. My once trusty companion, the double stroller, is, now, more of a cumbersome contraption. I found myself unable to keep up with Nathan as he swerved through the aisles in the toy store because the stroller was a darn wide load! Justin didn’t make it any easier as he preferred that I hold him under his arms as he walked through the aisles, following his brother. Eventually, I ditched the stroller to a side, and kept up with the kids at the train and race car track tables.

Upon entering the toy store, we met a nice father who later introduced us to his 3 year old son who has Down Syndrome and endured an open heart surgery. The father had noticed Justin’s scars when his shirt lifted a bit as he reached for a toy.

I knew he had seen more than he had bargained for when he allowed a “Wow” to escape his lips. I ignored it, not knowing how else to respond. Then, about a half minute later, he said, “You know, my son had heart surgery when he was 3 months old.”

The ice broke, and it turned out that we live in the same city. He told me how well his son is doing, health wise, and is trying to catch up cognitively. They had plans to travel to Japan the next day. After having his son, he and his wife had a pair of healthy twins.

I thought, “Wow, life does go on.” It does. We breathe, laugh, smile, explore, contemplate, move on, LIVE, every day.

He said goodbye and good luck, and I was so grateful. This really set the tone for the remainder of our weekend.

Beach

Can you believe that we live 25 minutes from the coast, but have not traveled to the beach for 2 years? Part of the reason is my phobia of the sun and the damage it could incur on our skin and health. The other part is because Justin is on certain medications that make him more sensitive to sunlight (i.e. sunburn). However, we lathered ourselves with sun block, topped our heads with brimmed hats, and headed out to the sea-side.

The kids kicked their feet in the water, Nathan chased waves, we dug our feet in the sand. In between, we lounged on our Lightening McQueen beach towels and munched on BBQ Lays Potato Chips and Rold Gold’s Pretzels.

It was only 2.5 hours that we spent on that beach, but I know it left such a positive impression on Nathan that he asked to do it, again, the next day. Maybe next week…

Justin looking out into the ocean.

Nathan preparing to scoop up some wet sand.

Can you find My Boys?

We sure are a colorful bunch

That evening, we attended a birthday party at Chuck E Cheese’s.

The remainder of the week was family time, and graduation parties.

Upcoming Events

This month, we’re looking forward to cherry picking on some local Cherry Orchards, movie in the park, and family clay time (Mommy and Nathan only). Maybe, a trip to the Discovery Center to learn about robots, if Nathan is up to it.

This week, Justin has neurology and opthamology appointments for routine check ups.

Thanks for checking up on us. I hope you all have a wonderful week.

My siblings, Dad, Loi and I decorated my parent’s backyard with flowers and hanging umbrellas for a Mother’s Day brunch.

Loi made a lox and cream cheese pizza appetizer.

The main dish: Eggs Benedict. Mmmmmm

A refreshing fruit platter as one of the desserts.

My boys with their Grandma.

The boys with their Mama (this was the best picture I could get with both of them next to me).

My younger sister, Yvonne, my Mom, Nathan, and me.

Justin being Justin.

Loi tasting his sauce for the eggs.

Justin is a little ham. He knows how to pose for the camera, now.

We visited my Grandma who helped raise me. She has so many grand and great-grandkids, I’ve lost count; But, she remembers and loves all of them. She is the definition of Super Mom/Grandma/Great-Grandma.

My family gathered back at my place after we came home from Sunday mass for another Mother’s Day meal (my mom ordered Vietnamese food). From L to R:  Chris, Dad, Nathan, Loi, Justin, Me, Mom, Yvonne, Diane.

Although Mother’s Day 2009 was quite a busy day, I would not have wanted any other way.

On Monday, we had Mother’s Day dinner with Loi’s family. Unfortunately, I was not able to get any pictures, and Justin was sick, so he didn’t attend.

Sorry this is so late, but I wanted to wish all of you Mamas and Mamas-to-Be a Happy Mother’s Day everyday!

JT trying out Mama’s sunglasses. He insisted on putting these on by himself, then exclaiming, “Cheeeeee!,” to encourage me to take a picture of him.

May 9, 2009: LEGOLAND Round 2

Our view of Legoland’s version of the NY skyline.

JT enjoying his time…

…as he watched on his brother

…taking another driving lesson at the Junior’s Driving School.

NT is getting pretty good at driving. He can even drive one handed. Yikes!

Justin isn’t tall enough to ride the helicopter into the sky (plus, there’s a restriction for people with heart problems as indicated on the sign. Note: ask cardiologist). But, he didn’t mind.

NT braved this ride during Round 2. He even took over the controls and didn’t let Papa touch anything!

JT only wanted to be carried; He does not like being confined to the stroller. This is Loi taking over JT carrying duty, and JT looking back to make sure Mama didn’t wander off somewhere.

The T brothers working on some Legos.

JT actually attached some to the board on his own, while standing on his own! Yay!

NT smiling proudly with the finished product.

For the past year, I’ve been engulfed in Justin’s heart and heterotaxy condition that I hadn’t taken the time to research on the effects of his cardiac surgery related stroke.

I think I hit an all time low last week when I saw so little improvement on Justin’s right affected arm/hand and leg despite the three times a week sessions for the past year. Like any mother, I wanted the best for my child, and I didn’t think I was providing enough for him to reach his potential.

On this particular day, when I had hit a low point, I had observed in therapy how much Justin wanted to walk, but couldn’t. He had made all the necessary movements, but his body was not cooperating. He’d step forward on this left, then on his right, and collapse to the right because he didn’t have the strength, balance, or proper foundation in his right foot. My child was working so hard, but his body and brain could not make the connections to do what he wanted it to do. I felt defeated despite all the options that laid ahead of me: intense therapy sessions, ankle brace, second opinions, sensory integration therapy, constricted induced therapy. I didn’t know who to trust, or which programs to entrust my child in.

That night, after the boys had laid their heads to sleep, I sat in front of my laptop and cried. I had felt like the answer was in front of my face, but I wasn’t looking in the right place.

After the cry, my head emerged from the fog of hopelessness, and it became clear to me what I had to do (crying is cathartic!). I started researching about cerebral palsy and on the term hemiparesis and hemiplegia, conditions that have been freely tossed around by Justin’s therapists. Although the cause of Justin’s brain injury is different than children with cerebral palsy, the repercussions and therapy for recovery are similar.

During my research, I found blogs and websites dedicated to children with hemiplegia. I suddenly came out of the dark and saw that there were many children like Justin, and felt less alone. I am grateful for the Hemi-Kids Listserv hosted by Children’s Hemiplegia and Stroke Association, in particular because it has allowed me to connect with many parents on one medium to learn from their experiences.

I love the internet!

The most important thing I’ve learned so far is that children who’ve experienced brain injury may never regain full usage or function of their affected side–and, it’s OK. One parent explained to me how well her child is able to function with one “good” arm, and the other as a “helper” arm. He’s even able to beat his bilateral capable friends in video games one handedly.

You see, I’m not looking for perfection, I’m looking for answers and hope. I am so grateful for all those families who are brave enough to share their stories out there, enabling a bit of light in a sometimes dark world.

I will update as I learn.

Happy Belated Chinese New Year (February 2009)

Brothers geared up and ready for a race!

Justin voluntarily used his right arm and hand, today. He actually understood and was aware of his right arm/hand.

Up until today, Justin refused to use his right hand/arm to do anything, and would often pull it back into a tight L position, bending at the elbows, and his hand would be in drop down position from the wrist or curled into a tight fist . His therapists have told me that while he’s working hard on an activity, he will retreat to these positions because he has less control of the right side which prevents him from relaxing it.

We’ve been working on bilateral play (using two hands to do things), weight bearing, deep massaging, sensory activities, and most recently the brushing technique to help him become more aware of his right arm/hand so that he would know that it exists so that he can use it.

The stroke he had back in January of 2008 damaged an area of the brain that controls his right arm/hand and leg/foot (possibly language/speech, also). It is our hope that, through occupational and physical therapy, he will be able to ‘re-wire’ his brain, and essentially build new synapses or connections to replace those that have been damaged.

The progress has been slow. It has now been 1 year and 2 months since he had experienced the stroke, and there is still little function or use of that right side. He tended to treat the arm like it doesn’t exist. If he did notice it, it was treated like a completely separate object from his body.

In the past two months, Justin has learned to combat crawl using both arms; He’ll appropriately swing his right arm forward to move forward. But, his hand continues to be neglected as he leaves it bent, and will not bear weight through his hands. He’s also learned to bring his hands to mid-line, clap with open left hand hitting fisted right, and sign ‘more’.

However, whenever I ask him to use his right hand/arm to perform an activity, he will often tighten that right side up. He would sometimes refuse, pulling that arm away. Whenever he does an activity on his own, he will ignore the right, and find other ways to perform the activity with his remaining limbs (left hand/arm, right and left leg/foot). He’s actually learned to perform some activities with just his left hand and left foot, like pressing buttons with his left hand, and on the same toy, spin an object with his right left foot. His therapists have commented on how smart he is for being able to compensate for what he doesn’t know he has.

Well, given our history with him, can you imagine the glee that filled my stomach when Justin actually repeatedly followed my direction to place his right hand on the steering wheel of his car?

I would place his right hand on the steering wheel, and tell him, “The right hand has to help you drive the car.” When he dropped that arm down, I would stop the car, and repeat this action. I’ve tried this technique over and over, again, and his arm/hand would just tighten into an L position so much that I could not even stretch his arm to reach the steering wheel.

Today, his right arm and hand were looser than usual, enabling me to better pull his arm to reach, and open his fingers to place it around the wheel. After two tries, whenever I reminded him where his arm/hand should be, he actually started placing his hand/arm in the correct position when it fell off (his grasp is still not very strong)…on his own! There were several times when I didn’t even have to remind him, and he did it. So very exciting.

He did so well that I took him out for a car ride two times, today, already. The second time around, he was also able to follow direction.

There is no way to prove this, but I must attribute some of this success to the brushing technique. We started this on Wednesday, and already, I see the difference in the tone and awareness of his right arm/hand. With the brushing technique, I also perform joint compressions immediately after, with deep massaging to finish it off.

He hasn’t done much weight bearing through his arms this week, and missed two of three days of therapy because he was sick. Prior to last week, he did not have therapy for 3 weeks, and did minimal weight bearing at home (again, sick Nathan and Justin). This is not to say that I do not think that the therapy sessions have not contributed to his awareness, but that I think the brushing technique has brought it to another level.

Another exciting update: Yesterday, Justin got up by himself (unassisted), repeatedly, from supine (on back) to sitting. He was able to do the same on his right several times!

His most recent developments encouraged me to start a journal that I wish I had thought of doing before. I’ve been taking notes on techniques, and journaling on his most major developments, but, I haven’t dedicated a journal to therapy. My hope is by doing so I will better communicate with his therapists about his developments, and allow me to organize my observations and his progress.

Yay, Justin!

It’s taken me a few days to update on our cardiology appointment because I’ve needed a little while to reflect.

We’ll start with the GOOD news. Justin’s leaky AV canal shows less regurgitation than a year ago, post bi-directional Glenn. His cardiologist labels it as mild to moderate (remember, this is subjective to the observer. The point is it has improved from moderate-severe.) His oxygen, or saturation levels, were at 85-90 percent. Although normal kids run at 100 percent, this is high for Justin. His blood pressure was low, with the systolic at 69, and 73, depending on the left or right leg. But, the mean was normal. The cardiologist was not concerned about this because the leg does not always give accurate readings. And, I assume his lack of worry is also due to  everything else looking decent. The medications that he is required to take for his heart, Lasix and Captopril, are at the same dosage. He will also continue on baby aspirin and amoxicillin. The other highlight of the day was to see Justin measure in at over 30 inches. 6 months ago, he was at about 27 inches.

Now, the BAD news. Justin is not gaining weight particularly well. He measured in at 3oz less than he did 6 months ago. He is completely off the charts, and even off his own curve. I also noted that Justin lost about 1.5-2 pounds due to his recent illness. That is A LOT of weight for someone so small. Cardiologist suggested we meet with GI clinic to see if he could get a milk drip at night to increase his caloric intake. Justin needs to be at about 13 kilogram, or 28.6 pounds, to be eligible for the next open heart surgery, the Fontan. He officially weighs at a mere 17 pounds, 3 oz. Unsure of when the Fontan is normally performed, I asked the cardiologist at what age. The answer: 3-4 years. I was actually surprised to hear this, as I thought it was more like 2-3 years of age, based on the post-Fontan blogs that I follow. This gives us a little more time to help Justin gain weight (well, hypothetically, anyway.).

OK, are you ready for the UGLY? I call this the UGLY segment because it just is on many levels. The discussion that I am about to discuss with you left me quite blue for 2 days, and I had to ask myself if how I was feeling was how depression feels like. I’ve never gotten to this point. And, I was quite disappointed in myself. I’m OK, now, but I really had to pull myself out of it to function for my kids.

Ever since Justin’s last cath/pacemaker/surgery/stroke ordeal, I’ve been left quesy with this neverending question of why. Notsomuch as in, Why did this happen to me or my child? But, more like, Why did the series of events occur as they did. The cardiologist’s answer is we will never know why. The important thing is that he is safe, now, with the pacemaker, and we’re doing the best we can through therapy to help him regain his abilities damaged by the stroke. What happened to Justin was very unusual, something that no one could have prepared me for. Cardiologist said that children with heart anomalies like Justin’s are expected to have complications that may lead to a pacemaker dependency or stroke–sometime down the years of their lives. But, never could he have predicted that Justin would be devasted by both before the age of 2 (but, really, it was 1 year old. Justin was only 5 months old). As a cardiologist, he’s seen a lot, and for him, Justin is unusual.

I’ve come to accept the IS  in our life, in Justin’s life. I do not retrace my steps to the past because I cannot let go of what has happened. I have dealt with it. I see the smile on Justin’s face, and I think, “He’s happy. That’s all I ever wanted for my child. And, that’s all that matters.” I take Justin to therapy 3 times a week, and meet with his infant stimulation teacher once a week. This is all normal to me. At the same time, I am thankful that Justin should have such opportunity. May I remind you that Justin is 19 months old, and cannot crawl like a typical 8 month old child can. He is just learning to stand on his own. He cannot walk. Normal 19 month old children run. Yet, I do not compare because I see the progress, though slow and slight, that Justin is making. I am proud of my child, and thankful for each day that he wakes and smiles at me.

I retrace my steps to the past because I am afraid of the future. There is this haunting thought in my mind, every day, that wonders if that last cath/pacemaker/surgery/stroke ordeal is a sign of something going on in his body that has not yet been rectified, that could lead to…I will not say it.

Towards the end of our cardiology appointment, I asked the cardiologist for literature on heterotaxy. Apparently, the literature would be too technical for me to understand. I asked him if there were any studies done about heterotaxy. He said yes, but mostly on the genetics aspect of it. I asked him if there was anything, anything else at all that I should know about Justin and heterotaxy. Tests that could be done. The questions started getting more general because I started getting desperate, hoping I’d get an answer somewhere. Finally, I asked a more specific question about his lungs, and whether or not he knows if they’re abnormal (as many of children with heterotaxy are). Could doctors tell through a chest x-ray? Cardiologist told me he hasn’t looked at that, yet, but he wouldn’t be surprised if there is abnormality in the formation of his lungs.

What does this mean, I ask? How does this affect how healthy he is? My readings and research have helped me understand, if nothing else, that heterotaxy is very complex, involving many or all systems of the body–cardiovascular, pulmonary, immune, digestive. And, he finally answered with something that I was trying to get at: all the systems work in synergy. “Exactly!”, I thought. So, how could we isolate only the heart as a malady, and not consider how every other system that is poorly formed in his body affects his heart, and the other way around. Shouldn’t other specialists work with the cardiologists in understanding these heterotaxy cases?

By this point in the conversation, I was ready to stop because I realized the enormity of the task I was about to ask of him. But, I didn’t. I asked him to help me. I asked him to share with me any information that he may get from knowing Justin’s condition and through his literature and observation of other heterotaxy children. To help me prepare or predict what may happen the next time around.

I realized how almost an impossible of a task it is. It may take beyond our lifetimes to know….why and how the body works in this synergy. The human body is complex. Basic elementary biology taught me that.

I was just so…afraid…of the future. I always want to be in control. And, suddenly, I realized that I’m not. Even, now, as I type, this thought brings tears to my eyes.

When I accepted this child as God has given him to me, I had accepted the great uncertainties, pain, and heartache that would follow.

In the two days after the meeting, I felt entirely hopeless. Hopeless of the future. I realized that it was the worst place to be, thinking like that. But, I was sad of the imminent truth.

What pulled me out of this rut? I cannot tell you that moment of epiphany. What I can tell you is that the more time I spend with my children, the more I learn of patience and graciousness. Each day is its own miracle, and I should not be so greedy as to ask for so much more.

Justin is the future. He lives a life that many could not have imagined until 30 years ago.

I continue to be thankful for each day, and take it as it comes. I cannot live being afraid of what could be, when what I have is a living miracle.

P.S–This does not mean that I will stop asking questions, and learning more about heterotaxy and Justin’s condition. I hate to say this, but it means I will expect less from his doctors. I think my expectations were set too high. Anyway, life is more worthwhile when you are appreciating rather than worrying.